Updates

Paying It Forward

Posted 02/26/2018 by Kristie Richardson

As I post Jaxon is sitting on my right side and Keyona on my left. Snuggled under cozy blankets, in front of a warm fire, while watching netflixs. This weekend marks a week that Keyona has been home, 20 days since she was taken off of life support and 600 hours since she was unable to breath on her own.
We spent the week stocking up on masks, vitamins, healthy food & hand sanitizer. Seeing the pediatrician, scheduling follow up appointments & meeting with her school. Next week is filled with lung function tests, starting back at school, physical therapy & challenging her body to keep up.
The morning before we chose to intubate her (insert a breathing tube) she developed a love/hate relationship with respiratory treatments. I vividly remember during one she was crying, looked me in my eyes and said “mommy please make them stop, I don’t want it anymore, just make it all stop.” My eyes filled with tears and I had to walk to the window in an attempt to keep her from seeing me cry. My heart broke at that very moment. As a distraction we tried to turn treatments into fun ideas while in the hospital. We would pretend that her nebulizer treatments were facials or set up an obstacle course in her room to see what would happen with her breathing.
She has been an absolute rockstar, often powering through all of the new things (masks,inhalers,steroids,pulse ox) with finding the positives in them. We decorate masks, have yummy smelling hand sanitizer and fantasize when going out that people stare because they want her autograph. As she says “I am famous!” Now, when having to use her 2 inhalers throughout the day she says “at least these are better than the facials!”
Yesterday we chose to celebrate the gift that we were given by paying it forward. We returned to Children’s Hospital with items that helped each of us during this journey. We showed Nana where we slept, cried, had to make life altering decisions with doctors and met so many amazing friends, family & strangers alike. We took these items, that signified each of our love languages and asked the secretary to give them to a family that there child is on ECMO.
Walking back in those doors, willingly and with an open heart was hard on so many levels. We remain thankful for the ones that did this for us in our time of need. It was important to Corey and I to do this for a family that remains in our prayers and teach our children to always give back.

First Day At Home

Posted 02/19/2018 by Sheena Powell

We spent our first 24 hours at home vegging out on the sofa, watching movies, laughing and catching up on the last 18 days. Yep.... and you guessed it.....SNUGGLING!!
As a mom the difference is this-
❤I'm embracing the sibling fights as it's music to my ears
❤I'm not in a rush to clean or organize
❤All of the couch cushions thrown on the floor, is a sight I want to see everyday for the rest of my life, because my daughter is home.
Not everyone's child is home tonight. One family is heavy on our hearts as their child continues to battle a story similar to Nana. Their child is not home. We would like to ask everyone that is praying for Keyona to bless this family with the same. I am being very vague purposefully as this is not my child story to share.
Corey and this child's father have created a bond that only dads can understand. We received so much love & it was truly what helped us in the darkest of times. We vow to pay it forward.
During this journey we have met so many amazing people that held space for us when we couldn't hold it for ourselves. As humans we can step out of our own gunk and make this world a better place in the smallest or largest of gestures. With everything bad happening globally I have a restored faith that we can create change!
After all, if you are reading this post, you helped take a traumatic event in my daughter's life and make it a globally beautiful story.......HER STORY OF A WALKING MIRACLE❤
Thank You,
Proud Mom of Keyona
News Story: http://kdvr.com/2018/02/17/10-year-old-released-from-hospital-after-fighting-the-flu/

Going Home: A Walking Miracle 2/17

Posted 02/19/2018 by Sheena Powell

Words can't describe the overwhelming feeling we feel. The love, prayers, support, meals, medical knowledge & heartfelt wishes made our girl a walking miracle!
We are home without oxygen or anything needed breathing wise overnight! All she wanted to do was run in the door to see her dog and force her brother to go to the park with her!

Mom Kristie's 2/13 Update

Posted 02/13/2018 by Sheena Powell

Two Step Forward, One Step Back (my Paula Abdul voice)
Yesterday we began weaning Keyona off of high-flow oxygen with the goal of getting her on room air. She was making substantial strides and was able to transition! The next goal was to trial her off of the CPAP at night, which we attempted last night. This morning she was very tired and her respirations were back in the 40s. Rather than trusting the monitor I checked them myself every 30 minutes and approached the team with my concerns. We addressed that we want to have a very low threshold as to not cause more damage to her lungs. The team agreed and we have put her back on the high flow. We are noticing that she is needing more pressure than oxygen so the current working plan is to keep her on the c-pap tonight and trial room air tomorrow with the new goal of giving her lungs a break overnight when she is in deep sleep. We have also added a steroid with her respiratory treatments to hopefully get a response from her lungs to begin to open on their own thus needing less pressure.
We are getting creative with keeping her busy in the room as she cannot leave due to being on flu precautions. She is not handling quarantine very well and is becoming bored. Child Life brought her in a awesome marshmallow shooter that she has been utilizing to work out her lungs and an added benefit of shooting her brother!
We have named a good majority of her stuffed animals. She chose ECMO for this frog! She has also named her poodle after one of her PICU nurses, Andrea. Tonight we plan on filling out comment cards for all of the amazing staff that have helped her along the way. Corey and I will do the ones that she cannot remember and she is excited to do a ones that have impacted her. The staff have truly been such an amazing part of her healing and we appreciate every single one of them!
Corey and I are okay with the little setbacks as we have our daughter. We remain very conscious of our comfort level in bringing her home. We do not want her on oxygen or a CPAP overnight due to how fast she deteriorated. The prayers & love truly helps all of us. Thank you

Mom Kristie's 2/10 Update

Posted 02/13/2018 by Sheena Powell

It Takes A Village
Keyona was moved to a pulmonary floor and welcomed with lots of love! She really likes her new room and says "I loves it because it's more private." We have again decorated it to create a space of love and healing!
She was able to see her Bubba which she had not seen in 10 days (since we brought her back to the hospital.) They were able to eat dinner together, paint some pictures, cuddle in bed and argue about who's getting all the awesome stuffies she's gotten. Particularly Flash the Sloth. Jaxon needed to see her as he has remained so strong through this entire process. Often sitting in the waiting rooms just holding a healing space for his sister. The last time he saw her she was on life support. It was heart-stopping to see them together.
She's currently on 3 liters of high-flow oxygen and 8 liters of CPAP overnight. I'll take this over the 14 she was requiring when we came in. We are doing some testing as she's having pain on her left side. The doctors are being very cautious and would like to rule out anything in a negative direction with her lungs or the possibility of a blood clot. We have set a goal to do meals in the chair and her spirometer every 30 minutes. She is a rockstar with it!
She tires easily but is up walking around when able. She took a bubble bath and has her phone back in her lap! Her appetite is increasing little by little. We both were able to get some sleep last night and just ordered soup on the snowy Colorado day.
Thank you to everyone that continues to follow and share her story. Please feel free to tag us in any new stories you see as we are having a hard time keeping up since she went global.
Our goal is to bring awareness to this horrible flu season. As a parent, that works in the education system, I had heard how bad the flu was this year but I didn't HEAR it until it was almost too late and I SAW it attempting to claim my little girl's life. We don't want anyone to ever have to see what we have or experience the past 11 days of our life. We say as parents that we cannot protect our kids from everything but we can take precautions and follow our parental instinct. You know your child more than anyone. Had we not brought Keyona back into the emergency room it is a high probability that we would have been having a funeral on this snowy day.

Mom Kristie 2/9 Update

Posted 02/13/2018 by Sheena Powell

A week ago today Nana was on life support, a ventilator and medically paralyzed from H1N1and pneumonia.
Today Keyona is doing great! She needed to be placed on a CPAP last night but given the condition her lungs were in a week ago it is to be expected. She tires out easily and needs to take naps. We are working on getting her appetite back up but her spunk is all there. In rounds the team said she is probably the only patient to come off of ECMO (life support) and 2 days later come off of a ventilator (breathing machine.)
All of your prayers, good vibes and continued support is what I believe got her there. Corey & I have been overwhelmed with the compassion of everyone and want to thank you from the bottom of our hearts. God is so good!
We will be transferring out of the Pediatric Intensive Care Unit today. We can't rave enough about all of the staff on this unit. The RN's, ECMO specialists, teams of Docs, respiratory therapist, housekeeping and any other person that entered her room had nothing but love and well wishes. They are absolutely amazing and we will forever be grateful to them for their knowledge, compassion and most of all saving our baby girls life.

Mom Kristie Update

Posted 02/09/2018 by Sheena Powell

Thumbs Up Buttercup!
I spent every moment of today marveling over the voice I hadn't heard in a week. Looking into the big beautiful brown eyes that I didn't know if I would ever see again.
Keyona doesn't remember much of what happened but she does know that she was on life support and says " I'm happy to be alive and I miss my bubba." This is her 11 year old brother. She didn't have many questions of the weeks events. All of the love, prayers and stuffies made her happy! She said "I'm famous."
She was able to advance to a regular diet. I gave her a deep bath and washed her hair very thoroughly as there was a lot of blood from the ECMO machine in it. She sat up in the chair as we made slime. A coping mechanism for her has become putting her hands in ice. I'm not sure why but I know that I was happy to fill the ice bucket at least 50 times today. She is still on a flovent for oxygen and will transfer to a general medical floor hopefully tomorrow.
As I've said many events in the past week have happened at 12 o'clock. Here is the meaning-The number 12 is a combination of the numbers 1, which means, "Stay positive," and 2, which means, "Keep the faith." Together, 12 is a strong message to stay positive, optimistic, and filled with faith . . . because your positive thoughts and faith will create a positive outcome.
She released me from my duties at the hospital as she is a daddy's girl,lol. It is a good thing as I have not slept much in the past 8 nights. Jaxon and I are cuddled in bed eating yummy strawberry shortcakes!

2/8 afternoon update

Mom Kristie 2/8 morning update

Posted 02/08/2018 by Sheena Powell

The last time I cuddled with my baby girl was a week ago to the day. Wrapped in IV lines, breathing machine tubes and a handy dandy suction, today we laid in bed & cuddled. Keyona told me she loved me and typed a note to me. I rubbed her feet as she did my head. I shared with her some of my personal struggles after my brain surgery just 6 months ago.
This little girl is amazing. I continue to tell her to think positive about the situation and embrace all of the great people we have met upon this journey.
So, tonight I sit next to her bed eating a sleeve of girl scout cookies. She is resting comfortably. I am overwhelmed by the out pouring of support. Things are definitely moving in the direction we prayed for but my shower still remains my break down spot. The day she was placed on life support I ran home with Jaxon. I sobbed uncontrollably on my bathroom floor for a good amount of time. I begged and pleaded with everything in me for him to not take my baby. Then I got off the floor, fixed my makeup & made my son breakfast.
Every morning I tell the kids I love them and to push themselves outside of their comfort zone to grow. Today Nana and I both agreed that we are far outside of our comfort zone.
Nana has made national news! Tomorrow her fight will air on the Today Show as well as in People magazine. She has to be the change..... not wish for it. This belief is what gets me through in rough times that I don't have a warm shower to ball my eyes out in. Well that and a sleeve of thin mint cookies.
#likemotherlikedaughter
#bethechange

Mom Kristie's 2/7 Update

Posted 02/08/2018 by Sheena Powell

We are beginning to wean Keyona off the ventilator with the plan of extubating her tomorrow! We were able to bump up respiratory therapy treatments to every 6 hours, remove to 2 IV's, her catheter and her rectal tube. We are also beginning to wean her off of pain meds as the risk for withdrawals increases the longer she is on them.
She is communicating with us via pointing to letters in the alphabet as we write the sentence out. Today she asked for a bath. I scrubbed her from head to toe, rubbed her down with yummy lotion, cleaned her lips, washed and braided her hair (with a added head massage of course.)
Today she is very tired and sad. Last night we were up for the majority of the night as she is very hot. It is most likely that she has been running a fever this entire course however the ECMO machine regulated her body temperature. She taught me how to suction her! She's a fighter.
Today we are choosing ourwording very wisely and remain conscientious of what she hears. We had a good talk this morning as she said she was sad that she has to stay in bed. We continue encouraging her, telling her how wonderful she is doing and the impact she is making on so many.
My focus remains how to keep her health intact along with teaching her to take this event that has happened to her and make something amazing out of it! It is her story, it will always be a part of her and within the scary moments there is always a way to touch someone else.
As a mommy it is important to me that my children make an impact on this Earth. Some may say you can't do that at 10 years old, I say you can!

UPDATE (Per Mom)

Posted 02/06/2018 by Sheena Powell

Keyona is doing great!
We are not out of the woods yet but definitely in the uphill swing. Her story has brought so much awareness and continues to do so.
She will be on Fox 31 News and Channel 2 at 4pm today.
She will also be on channel 7 tomorrow.

Mom Kristie's 2/6 Update

Posted 02/06/2018 by Sheena Powell

Keyona was able to tolerate degassing overnight! I couldn't sleep so I came down to her room to read to her. She was wide awake and wanting to hold my hand.
I will do an update after rounds but the working plan is to attempt to decannulate the ECMO machine today. This process involves turning ECMO off & pulling the tubes out of her heart & neck. The risk to this is very high as she is still on a ventilator and not breathing on her own. Coupled with a massive amount of blood thinners. Caution has to be taken due to the risk of bleeding out.
She has become aware of the 3 IV's, 1 PICC line, catheter, ventalator (breathing tube), IJ in her neck, rectal tube & arm restraints thus she cries often. Today I am going to give a shot at having her write on a dry erase board. She needs to feel in control & be able to communicate. Kiddos often withdraw at this point and we have to be diligent & proactive in keeping her "checked in."
We are only allowing family in her room at this time. We want her to feel comfortable and engaged in her healing process. Nana is my introvert and protecting her spirit along with her health is my number one priority.

Mom Kristie's 2/5 Update

Posted 02/06/2018 by Sheena Powell

Tonight as I unpack my bag in the sleep room all I want to do is go back to Nana's room. I know I need to get some sleep too but today I was able to communicate with my baby & that makes it so hard to leave. She opened her eyes many times, nodded to questions and you'll see in the video below definitely let her little personality shine thru!
The team opted not to put in a chest tube as her lungs have improved. The antibiotics are working! We are rounding into taking a aggressive approach to open up her lungs as we have let them rest for a few days. We changed her vent settings requiring her to breathe more on her own. She did not require any doses of morphine today as we were able to keep her calm with distraction. Her likes and dislikes continue to be our best advocate in keeping her comfortable.
Corey and I are finding the balance of keeping Jaxons life as normal as possible. He has to know that he is just as important. Corey went home with him tonight and we will begin to rotate nightly so one of us can be with him and one with Keyona. I just keep telling him to remember that he is as important & loved as Nana. Tonight we did a video call between them because they are best friends. I asked Nana if she could hear her brother and she nodded her head yes!
Not in a million years did I think that the flu could do this. I heard from a nurse today that Keyona maybe the first patient in the hospital this year to have H1N1. I continue to be so thankful for this machine, the staff and most of all Keyona. She is our fighter💛💛💛💛💛💛💛💛💛💛

Mom Kristie's 2/4 Update

Posted 02/04/2018 by Sheena Powell

Sorry for the late update. Yesterday was busy! Keyona had a bronchotomy and ultrasound of her lungs. Her lungs are still collapsed. The overall goal of the bronchotomy is to suck out as much mucus as possible to help her lungs open. The working plan is to do this daily to assist in clearing mucus out. The ultrasound was to check the space between the lungs and the wall of the chest.
We will decide today if placing a chest tube to drain any fluid is beneficial. We have to measure risks vs. benefits with all procedures at this point as the team is concerned about the amount of plastic in her body. The canula line in her neck (life support) is bleeding and her skin is becoming irritated. Today we will see if she needs to be taken back into surgery to reposition the tubing.
She began to take very small breaths on her own. Nothing that can support her but it is progress! She is coughing, which is also a good thing as we want her to clear as much on her own as she can. She has been taken off the paralytics so she can hear everything that is going on. She becomes agitated with diaper changes via pulling her legs closed and biting the breathing tube. I see this as a great sign as it shows she knows something is not right with people touching her girls parts. She opened her eyes and looked at me for a brief moment! I haven’t seen my baby girls eyes since Wednesday. It was perfect!
We appreciate all of the love, prayers, visitors and support. It means more than you could ever know! Keyona and I always snuggle. This is what we were doing when I got the feeling I needed to take her back to the hospital. I would like to classify today as Nana Snuggle Sunday! Snuggle with your babies my friends. Love all over them today and everyday. Please post a pic of you snuggling with your babies in the comments so I can show Nana the snuggle effect she has caused.

Update From Mom Kristie on 2/3/18

Posted 02/03/2018 by Sheena Powell

Today was a day of patience,waiting & prayer.
We are certain that this was brought on from H1N1. We are still exploring the type of pneumonia she has. Due to its rapid progression we are thinking it's staph pneumonia.
Today the infectious disease team changed around some of her antibiotics. She is being kept as comfortable as possible via sedation and medically paralyzing her. She has two nurses that are by her side 24 hours a day. The timeframe truly is how quickly her body responds. It could be days or months to wean her first off the ECMO, then off the ventilator.
The goal for tomorrow is to lighten the sedation in the hopes she will respond calmly. If she begins to pull at any of her tubes she will require restraints or heavy sedation yet again. We are hopeful as she had a brief moment today when she was responding to questions via nodding and holding hands.
The ECMO machine continues to be what is keeping her alive. I cannot express to you how amazing this machine is. It is literally working as her lungs. She had a fever of 105, oxygen in the low 80's going into surgery for the ECMO. We were hesitant but were advised that she would not have lived through the hour if we did not make the attempt.
The ECMO machine is able to chill the blood that is being given to her amongst thus breaking her fever. I've linked an article in the comments as this machine is an absolute miracle.